m. robin dimatteo and tricia a. miller

J Breland

nent and Ital Care It safety tries 127

E Tighe ld adolesshyIn andmiddotpel_ doleseellt

1 Ogata sk factors Safety I

M Robin DiMatteo and Tricia A Miller

Treatment Adherence in Adolescence

Quality health care outcomes depend upon patients adherence to a variety of treatments including medication medical device use and lifestyle management such as diet and exercise Adherence refers to the degree to which an indishyvidual follows disease management activities as directed by their health professional The empirishycal study of adherence now spans more than 50 years in the scientific literatures of psychology medicine and public health Nonadherence has been found to be a pervasive threat to health and well-being and imposes an appreciable economic burden estimated at 290-300 billion dollars per year (DiMatteo 2004a New England Healthcare Institute 2010) More than 240 million medical visits per year are wasted due to nonadherence (Haskard-Zolnierek amp DiMatteo 2009) and both providers and patients often remain unaware that a major cause of poor health outcomes is poor adherence (DiMatteo Haskard-Zolnierek amp Martin 2012)

While adherence behavior is not itself a health outcome adherence is significantly related to both acute and chronic disease outcomes Metashyanalysis shows substantial and statistically significant outcome differences (26 ) between

MR DiMatteo PhD(l8I)middot TA Miller MA Department of Psychology University of California 900 University Ave Riverside CA 92521 USA e-mail robinucredutrishmillerl22gmailcom

high and low adherence in all disease realms Among pediatric (including adolescent) patients adherence is significantly more strongly related to health outcomes than it is for adults The difshyference in risk of a poor health outcome is 33 greater with poor adherence than with good adherence in samples of children and adolesshycents for adults this risk difference is only 23 (z=264 pltOOI) (DiMatteo Giordani Lepper amp Croghan 2002)

Adolescent Nonadherence

The challenges of treatment adherence have been studied extensively in adult popUlations but less so in child and adolescent care In a meta-analysis of 569 empirical studies of adherence spanning the history of adherence research to that time DiMatteo (2004a) found four times as many studshyies of adult populations (18 and older) as pediatshyric and only a portion of the pediatric studies involved only adolescents Since 2004 the corshypus of studies of adolescent adherence has grown appreciably however with a recent search proshyducing over 900 empirical research references 162 of which were published in the year 2010 alone

Adolescent nonadherence typically takes a number of forms Although parents are likely to be in charge of fillingrefilling medication preshyscriptions scheduling medical appointments and transporting the patient to treatment adolescents themselves are likely to be expected to take

wT ODonohue et al (eds) Halldbook ()f Adolescent Health Psychology 001 101007978-1-4614-6633-8_24 copy Springer Science+Business Media New York 2013

373

374

responsibility for various health actions including testing blood sugar levels taking insulin injecshytions following a prescribed diet or avoiding proscribed foods (eg those containing gluten) doing specific exercises for a sports injury and following a daily asthma treatment regimen to avoid a breathing crisis

The prevalence of nonadherence across a wide variety of diseases regimens and patient populashytions averages 25 although in some disease conditions such as the complex management of diabetes nonadherence can be 50 or more In meta-analytic work with stable estimates there is a significant trend for (40 I) studies of adults to yield higher adherence (768 ) than (I 16) studshyies of pediatric patients (706 ) (t(515) =284 p=0005) Among adult patients there is no relationship between age and adherence (83 studshyies r~ 00 I d= 002) but among pediatric patients (41 studies r=-006 d=-012) adhershyence is lower among adolescents than it is among children (plt010) (DiMatteo 2004a)

Treatment nonadherence in pediatric populashytions is estimated in further studies to be about 50-55 (Rapoff 1999) among children with asthma followed in a specialist clinic medication adherence was about 70 (Phelan 1984) Based on structured interviews and daily phone diaries more than 50 ofadolescents with cystic fibrosis reported doing less than their prescribed airway clearance regimen and 30 indicated that they were not doing any of their prescribed regimens (DiGirolmo Quittner Ackerman amp Stevens 1997) In a study of prescription medication adherence among adolescents complete adhershyence to the prescription was only 362 (Chappuy Treluyer Faesch Giraud amp Cheron 2009) Between 50 and 60 of children and adoshylescents with adherence problems were found to underuse their prescribed medication (while less than 10 overused it) (Chmelik amp Doughty 1994 Coutts Gibson amp Paton 1992) Among adolescent patients with adequate functional health literacy 357 were categorized as adhershyent but only 235 of those with marginalinadshyequate health 1iteracy were categorized as adherent (Murphy et aI 2010) Twenty-five pershycent of adolescents with type I diabetes reported

MR DiMatteo and TA Miller

mismanagement behaviors such as missing insushylin shots (Kovacs Goldston Obrosky amp Iyengar 1992 Weissberg-Benchell et aI 1995) In asthma treatment the average overall adherence rate among African-American adolescents (measured as daily mean percent of prescribed inhaler puffs) was only 315 Adherence also decreased over time from 42 at the start of the study to only 202 of prescribed puffs after a year on treatshyment (Rohan et aI 2010)

Simmons Logan Chastain and Cerullo (2010) found variability in adherence as a funcshytion of the treatment regimen Among adolesshycents who were recommended a medication change 531 were fully adherent 875 were fully adherent to obtaining additional recomshymended tests Of participants prescribed physical therapy 100 were fully adherent to continuing if they had already started but only 75 began 909 were fully adherent to use of a TENS unit but only 60 were fully adherent to an indepenshydent exercise program Adherence to psychologishycal recommendations varied as well 857 of adolescents were fully adherent to continuing treatment with their current therapist but only 467 were fully adherent to beginning cognishytive behavioral therapy (Simmons et aI 20 I0)

Understanding Treatment Adherence in Adolescent Patients

The empirical literature on treatment adherence in all age groups has documented a wide variety of factors that influence the degree to which patients follow medical recommendations Researchers have offered empirical evidence for

the contribution of dozens of intra- and interpershysonal environmental disease-related and regishymen-related factors Practical applications of this research are somewhat limited however because there are so many causes of nonadherence It is critical to understand these causes in a workshyable conceptual framework in order to design successful programs to advance adherence among adolescents DiMatteo et al (2012) describe the Information Motivation Strategy (IMS) model which distills the findings of the

Treatment A

complex Ii understanc model pal three stra They do n to do (eg are lackin decision-r and rappe limited) their treat benefits 0

andor cu behavior) strategy f do not ha way) In t examine 1

chronic il of this IT

categorie herence adherenci text of th

Informe

The con health pI mary ele treatmen treatmen Commur ment of of their [ for build In a rc between treatmer derline 5

r=024) age r=1

training showed patient a (averagt pediatrii

I

j TA Miller Treatment Adherence in Adolescence 375

sing insushy complex literature into three main elements for r=OIO) (1(19)=342 p=0OO3) (Haskardshy~ Iyengar understanding adherence According to the IMS Zolnierek amp DiMatteo 2009) In asthma model patients of all ages are non-adherent for At the most basic level recall of recommenshyence rate three straightforward classes of reasons (I) dations is essential although studies have shown measured They do not understand what they are supposed the majority of adults (eg Kravitz et ai 1993) aler puffs) to do (eg information transmittal and gathering as well as children and their parents (levers et ai ased overmiddot are lacking they have not participated in the 1999 Lewis Pantell amp Sharp 1991) fail to recall dy to only decision-making process their communication what they are told about disease management r on treat- and rapport with their health professionals is during their medical visits Patients and caregivshy

limited) (2) they are not motivated to follow ers need the opportunity to ask questions and I Cerullo their treatment (eg they do not believe that the have them answered to clarify information they as a func- benefits outweigh the costs their social network are given and to teach back to their health proshy19 adolesshy andor cultural environment do not support the fessionals what they have learned All patients nedication behavior) and (3) they do not have a workable including adolescents need the chance to particishy5 were strategy for following the treatment (eg they pate in the decision process and to determine how al recomshy do not have help practical barriers stand in the they will follow their treatment (Golin DiMatteo ~d physical way) In the following section of this chapter we amp Gelberg 1996) When patients and their docshycontinuing examine the specific challenges in treatment of tors share similar beliefs about patient participashy began chronic illness among adolescents in the context tion (that is when patients are motivated to rENS unit of this model attempting to understand three participate and their physicians allow them to do n indepenshy categories of factors related to adolescent nonadshy so) patient outcomes tend to be more positive sychologi- herence We also examine the effectiveness of and patients are more satisfied (Jahng Martin 857 of adherence-enhancing interventions in the conshy Golin amp DiMatteo 2005) Patients are also more continuing text of this model adherent to physicians who answer their quesshy[ but only tions (DiMatteo et ai 1993) and patients are ling cognishy typically willing to follow treatment recommenshy12010) Information dations only for health professionals they trust

and who provide satisfactory interpersonal qualshyThe communication of information between ity ofcare (Sherbourne Hays Ordway DiMatteo health professionals and their patients is a prishy amp Kravitz 1992) mary element essential for the achievement of Whether patients understand and can follow treatment adherence patients cannot follow their treatment is related strongly to their health

adherence

herence

treatments they do not fully understand literacy which has been found to be a major facshyide variety Communication is essential for a realistic assessshy tor among HIV-infected adolescents (of whom to which ment of patients knowledge and understanding almost 15 were found to have inadequate or 1endations of their regimen and communication is essential marginal health literacy) Among the 85 of vidence for for building trust in the therapeutic relationship participants with adequate functional health litshyld interpershy In a recent meta-analysis the relationship eracy only 36 were categorized as adherent I and regishy between physician-patient communication and and among those with marginal or inadequate ications of treatment adherence was found to be higher (borshy health literacy only 235 were categorized as I however derline significant) in pediatric practice (average adherent (Murphy et al 20 I0) Adjusting for age ladherence r~024) than in the care of adult patients (avershy and education level viral load and self-efficacy s in a workshy age r=018) (t(101)= 175 p=008) Further to adhere to medication regimens however adoshyr to design training to improve physician communication lescents own health literacy was not significantly

adherence showed significantly more improvement in associated with their medication adherence a1 (2012) patient adherence when pediatricians were trained (Murphy et ai 2010) But as Janisse Naar-King

n Strategy (average effect size r=027) than when nonshy and Ellis (2010) found among high-risk adolesshyjngs of the pediatricians were trained (average effect size cents with IDDM parental literacyreading

------------- _-----shy

----376

comprehension was significantly related to treatment adherence among adolescents on an intensive insulin regimen (Janisse et aI 2010) Parents with low health literacy struggled to help their children adhere to increasingly complex diabetes treatment regimens leading the authors to suggest that families may benefit from more intensive diabetes education or different approaches to teaching diabetes management skills (Janisse et aI 2010)

Essential elements of improving communication involve strengthening physician-family interacshytions and the relationship between the adolescent and health professionals the goal is to help understand the adolescent as well as the disease (Drotar 2009 Simmons et aI 2010) Drotar (2009) studied both parents and childrens perceptions of their pediatricians behavior in the management of pediatric chronic illness treatshyment management and correlated the providers communication behavior with treatment adhershyence The findings showed that discrepancies between the needs of parents and their children and inconsistencies in physicians behavior while explaining treatment procedures were related to limitations in the childrens adherence to treatshyment Further understanding and implementing complex treatments such as for diabetes can be challenging to even the most motivated parents and their adolescents (Rudy Murphy Harris Muenz amp Ellen 2009)

Motivation

Probably more than in any other age group adherence among adolescents is affected by issues of motivation The motivations of the adoshylescents themselves as well as of their parents siblings and peers can have strong effects on commitment to a treatment regimen and ultishymately on its fulfillment (Wysocki Greco amp Buckloh 2003) Motivation for treatment adhershyence is built upon a number of factors (DiMatteo et aI 2012) These include the following (l) belief in the treatment (the necessity of it and its value) (2) the perceived costs of the treatment (particularly in terms of potential losses of social


status cultural norm maintenance and peer acceptance) and (3) attitudes about the illness (ie its meaning) and treatment (ie expectations that the benefits outweigh any costs) and about the self in relation to disease management (selfshyefficacy) Beliefs attitudes motivations and their resultant commitment to treatment may be particularly difficult to achieve for an adolescent patient because he or she is embedded within a social system comprised of influential family members as well as peers who may not support the regimen (or with whom the adolescent is resistant to share the issues of care) Further adult caregivers and parents may struggle to bridge the differences in attitudes and beliefs between the adolescent and all of the adults with whom they deal

Models of health behavior and general behavshyior change (eg the Health Belief Model the Theory of Planned Behavior) (Martin HaskardshyZolnierek amp DiMatteo 20 I 0) posit beliefs and attitudes as the building blocks of commitment to action Commitment requires belief in potentially negative and serious consequences of not acting the expectation that the benefits of acting will outshyweigh the costs (broadly defined) of doing so a synchrony between the beliefs and desires of the individual and his or her social (including cultural) environment as well as the individuals belief in his or her own ability to act (ie self-efficacy) These models suggest that clinically it is vital to know the patient well and to identify and manage realistic treatment goals and expectations for therapy In the case of adolescent care it is also vital to know the adult caregivers Understanding what patients and their parentsguardians expect and believe what they are influenced by and what they can be inspired or prompted to do allows for health professionals to support adolescent motivation to adhere to treatment

Chronic illness management can challenge the self-esteem of some adolescents (Friedman et aI 1986) who may become frustrated and view themselves as defective because of their illshyness such feelings can potentially contribute to significant emotional distress (Rudy et aI 2(09) Adolescents may view their illness and treatment regimens as forcing an unwanted dependence on

Treatment Adt

their parents (Rudy et aL understand 1

their condit their medic the effect 0

medicatiom so their ber the health ( ment might cystic fibro noticed at to nonadhe be ignored likely to hl mitment tl Denson amp ment is m

and goals commitme et aI 20l(

For ma stigma ofl iting acti et at 2()(

lescence i and to be The ever) (such as injectiom popular f celiac dis and dif

avoid so regimen Fleischm adolesce agement contexts ally beil their cor

The (includil each ott ior) ma) cent pal treatme Toobert

377 TA Miller Treatment Adherence in Adolescence -nd peer

e illness ectations nd about nt (selfshy

ms and t may be iolescent within a

t1 family t support

escent is Further

uggle to d beliefs lults with

al behavshyodel the Haskardshy

liefs and litment to otentially ot acting ~ will outshy)ing so a

res of the 5 cultural) belief in middotefficacy) is vital to

d manage or therapy 0 vital to iing what xpect and what they for health

tivation to

lllenge the man et aI and view their iIlshyntribute to al2009) treatment

ndence on

their parents guardians and health professionals (Rudy et aI 2009) Sometimes in an attempt to understand the full meaning and implications of their condition adolescents might stop taking their medications as an experiment to determine the effect on their health or welI-being Not all medications produce immediate results however so their benefits may not be at alI obvious and the health consequences of not following treatshyment might also be delayed (eg celiac disease cystic fibrosis) Some consequences might not be noticed at all or might not be clearly connected to nonadherence Distal future outcomes might be ignored completely because adolescents are likely to have some difficulty with focused comshymitment to the future (lngerski Baldassano Denson amp Hommel 2010) The belief that treatshyment is not necessary to their current interests and goals may severely limit some adolescents commitment to disease management (Ingerski et aI 2010)

For many adolescent patients the perceived stigma of being ill is one of the major factors limshyiting active adherence to treatment (Wysocki et aI 2003) The developmental period of adoshylescence is one in which the struggle to fit in and to be accepted by peers is a primary concern The everyday management of a chronic disease (such as with blood sugar testing and insulin injections by the diabetic or the avoidance of popular foods such as pizza by the patient with celiac disease) can be a source of embarrassment and differentness leading the adolescent to avoid social stigma by avoiding the treatment regimen (Friedman et aI 1986 Salamon Hains Fleischman Davies amp Kichler 2010) Some adolescents may even have difficulty with manshyagement of their disease within certain social contexts because ofdirect peer pressure and actushyally being singled out for criticism because of their condition (Wysocki et aI 2003)

The sociocultural norms of adolescence (including expectations that adolescents have for each other regarding dress activities and behavshyior) may carry a great deal of weight in an adolesshycent patients decisions about health action and treatment adherence (Hampson Glasgow amp Toobert 1990) These cultural norms can affect

_-- _ _

responses to treatment plans as well as perceptions of the meaning of illness and the sick role and the acceptability of seeking and accepting advice from adult caregivers (Hampson et aI ] 990 La Greca Bearman amp Moore 2002) For adolesshycents friends and peer group members may be the strongest influences in their lives and in their commitment to care (La Greca et aI 2002) Thus culture not only refers to racial and ethnic identification but extends to the broader adolesshycent culture underscoring the need for health professionals who work with adolescent patients to fully understand adolescent culture (both broadly and regionally) perhaps working with psychologists who are experts in adolescent treatshyment (Christian amp D Auria 1997) Providers should identify the important individuals and influences in the adolescents life and examine their understanding of beliefs about and influences on the patients treatment and adhershyence (La Greca et aI 2002 Thomas Peterson amp Goldstein 1997) Concerns about norms and adolescent culture should be discussed with the patient and his or her caregivers in an effort to increase awareness of the factors that can affect the success of medical recommendations (Christian amp DAuria 1997)

Adolescents with chronic disease can face daily challenges of social pressure especially when their medical condition makes them appear different from their friends (Christian amp DAuria 1997 La Greca amp Hanna as cited in La Greca et aI 2002) For the diabetic for example the complexities of dietary adherence and invasive activities such as blood glucose testing and insushylin injection are potentially significant issues that can derail adherence (Thomas et aI 1997) Promoting patient adherence requires health proshyfessionals to determine the degree to which their adolescent patients feel their disease affects their friendships and to try to find ways to deal with these challenges (La Greca et aI 2002)

Although the findings are mixed some research suggests that by being generally supshyportive (though not necessarily helping directly with treatment) peers can help to motivate adoshylescents to be adherent to chronic disease manshyagement In a review by La Greca et al (2002)

-- shy

378

data suggested that adolescents perceive the support of their friends to be more important in certain areas (eg meals and exercise) than in other areas of management (eg insulin injecshytions and blood testing) Friends may also be helpful with emotional reactions Bearman and La Greca (2002) however did find that friend support although not related to overall treatment adherence was related to higher adherence for blood glucose testing These findings argue for the importance of identifying the specific areas of disease management in which friends can be most supportive and facilitating that support with education and encouragement Providers should respectfully address patients beliefs (including their concerns about the role of peers) and should serve as both partners and persuaders working together with adolescent patients to arrive at mutually agreed-upon courses of action and using the strength of the therapeutic relationshyship to facilitate the adolescents commitment to the treatment regimen Identification of the stage of change at which the adolescent is approachshying the treatment and working with the patients beliefs attitudes subjective norms and cultural context providers can help the patient to develop and maintain a commitment to long-term disease management (Prochaska DiClemente amp Norcross 1992)

Strategy

Even with a full understanding of the disease and treatment strongly held commitment the best of intentions and supportive norms individuals may still fail to adhere to necessary health behavshyiors because they encounter practical difficulties Patients can only do what they are capable of doing within their resource limitations those resources can range from affordable treatments to organized and supportive families to wellshydeveloped habits Thus the third element of achieving adherence involves identifying the barshyriers that adolescent patients face in following their treatment and assisting them to gain the necshyessary resources and supports to solve their strashytegic challenges


Practical Barriers Practical barriers can represent some of the most common challenges to patient adherence At the simplest level a medications bad taste has been found to limit adherence among children and early adolescents (Ingerski et aI 20 I 0) Economic challenges may limit the affordability of treatshyment (Rohan et aI 2010) and combined with other pressures such as difficult parental work schedules can result in parents failures to obtain on-time refills of medications In a study of adoshylescents with inflammatory bowel disease who were taking oral medications the most comshymonly reported barriers included forgetting (878 ) being away from home (473 ) intershyference with an activity (446 ) refusaldefiance (176 ) not feeling well (162 ) and running out of the medication (162 ) Intensive treatshyments (such as for HIV diabetes CF) may be quite demanding and difficult for adolescents and families to manage (lngerski et aI 2010) Orban et ai (20 I 0) found that the most frequent stresshysors reported by adolescents receiving treatment for HIV were related to medication-taking (Orban et aI 2010) even despite the availability of clinic support services for adhering These services however tended to focus more on tangible aspects of adherence such as medication reminders in fact some efforts such as passive coping strateshygies made youth feel helpless and frustrated increasing depression and reducing adherence (Orban et aI 2010)

Treatments for chronic disease interfere with the lives of adolescents in major ways Medication schedules can disrupt normal routines and both school and after-school schedules Dosage freshyquency influences adherence to prescriptions with more frequent dosing resulting in lower adherence average adherence was 73 for once daily regimens 70 for twice daily 52 for thrice daily and 42 for four times a day regishymens (Chappuy et al 2009) Researchers have found that adherence to complex and intrusive treatments such as dietary modification glucose monitoring and physical therapy is even lower than adherence to medical regimens in adolesshycents (Rapoff 1999) Length of treatment also influences adherence In one study with children

Treatment Ac

treated for was signifi days than f( et aI 2001 manageme adherence

One of ability to f practical s the barrier A meta-an studies fOt patients available when pa (DiMatte( ence In a assessed average c tus and tl among n average ( tus and significal amongcl to be 13 from tht risk of n cents w Furtherr such tha was as care of r=-O ] greater tional r energy

ShOI on ph signific the nelt manag examp were admin

are ad includ and agt

d TA Miller

If the most Ice At the e has been ildren and Economic y of treatshyined with otal work s to obtain dy of adoshysease who nost comshyforgetting

) intershyaIdefiance nd running lsive treatshyF) may be ~scents and 10) Orban luent stresshy~ treatment ing (Orban ity of clinic e services Ible aspects ninders in )ing strateshyfrustrated adherence

erfere with Medication s and both )osage freshyescriptions g in lower for once

I 52 for a day regishy

rchers have ld intrusive on glucose even lower

~ in adolesshyatment also ith children


treated for pneumococcal infection adherence was significantly better for shorter therapy of 5 days than for the longer therapy of 10 days (Schrag et aI 2001) Of course long-term chronic disease management is likely to produce even lower adherence (World Health Organization 2003)

One of the most important factors in patients ability to follow treatment involves the deoree of

e practical support available to them to deal with the barriers encountered (Sherbourne et aI 1992) A meta-analytic review of the literature from 122 studies found a significant positive relationship of patients adherence with the practical support available to them adherence was 27 higher when patients had practical social support (DiMatteo 2oo4b) Social networks affect adhershyence In a meta-analysis DiMatteo (2004a 2oo4b) assessed 40 studies of adult patients in which the average correlation between subjects marital stashytus and their adherence was only 005 However among nine samples of pediatric patients the average correlation between parents marital stashytus and childrens treatment adherence was significant (r= 015) The risk of nonadherence among children with unmarried parents was found to be 135 times higher (standardized relative risk from the binomial effect-size display) than the risk of nonadherence among children and adolesshycents with married parents (DiMatteo 2oo4b) Furthermore this meta-analysis showed a trend such that a greater number of people in the family was associated with lower adherence in the care of pediatric patients (median r= -022 mean r=-017) A likely explanation would involve greater competition for both physical and emoshytional resources including parental attention and energy in larger families

Shorter duration of hospital stays and limits on physician time spent with patients have significantly shifted care to families and increased the need for family responsibility in treatment management for children and adolescents For example cancer medications that in the past were given to children in hospital may now be administered by parents at home Certainly there are advantages to home care for pediatric patients including the comfort and familiarity of setting and availability of relatives and friends However

although some families are able to administer treatments effectively not all are capable of takshying on the organization and planning necessary to manage treatment responsibly (Riekert amp Drotar 1999) Some families may have difficulty indeshypendently caring for medical symptoms (such as of asthma) and instead rely on health care providshyers in clinic or emergency room visits (Rohan et aI 20 I 0)

Emotional Distress and Family Conflict Stress and emotional distress in the patient and in the family can be significant barriers to adhershyence (Cox amp Gonder-Frederick 1992) Depression and distress can be common in medishycal patients and are associated with diminished health status (Sherbourne Wells Meredith Jackson amp Camp 1996) and increased health care utilization (Manning amp Wells 1992 Simon Ormel VonKorff amp Barlow 1995) In a metashyanalysis the relationship between depression and nonadherence was substantial and significant (DiMatteo Lepper amp Croghan 2000) Compared with non depressed patients the odds were three times greater that depressed patients would be non-adherent suggesting the importance of recshyognizing depression as a risk factor for poor outshycomes among patients who might not be adhering to medical advice In the Medical Outcomes Study a longitudinal study of 1198 patients with chronic medical diseases (hypertension diabetes heart disease) patients who were distressed about their health used avoidant coping strategies or reported worse physical and role functioning were less likely to adhere in general (Sherbourne et aI 1992) Blotcky Cohen Conaster and Klopovich (1985) found that subjective distress was significantly related (r=-048) to refusal of treatment among children with cancer Brownbridge and Fielding (1989) found adhershyence to be significantly lower in the care of chilshydren with end-stage renal disease when the main caregiver was depressed (r=-045)

There is a negative relationship between adhershyence and family conflict (including dysfunctional family interactions the anger of a healthy sibling and family pathology) an average r effect size of -021 indicated that poorer adherence was

380 MR DiMatteo and TA Miller Treatment Ac

------~-----------~--------

associated with greater family conflict and that often changes in the allocation of treatmentshy responsibili the odds of nonadherence among patients in related responsibilities among adolescent patients that family higher conflict families were 235 times higher and their caregivers Yet although adolescents ing adhere than among those in families with lower levels of can be given increased responsibility for their illness (Me conflict (DiMatteo 2004b) Effective communishy care compared to what they had as children Should cation about decision-making autonomy is also research shows that adolescents need help from about their critical Miller and Drotar (2003) documented their parents as well as scheduled support and sibility fOi the relationship between discrepancies in mother help from their health professionals Data sugshy and Drotar and adolescent perceptions of diabetes-related gest that there are predictable differences in making au decision-making autonomy diabetes-related conshy treatment-related expectations for adherence not necess flict and regimen adherence discrepancies behaviors among children versus adolescent making th between mothers and their adolescents percepshy For example children age 7-10 will likely have decision-n tions of decision-making autonomy were related different and fewer responsibilities compared to agement v to greater maternal report of diabetes-related those II-IS years of age (Modi Marciel Slater by parent~ conflict In particular mothers reported greater Drotar amp Quittner 2008 WaldersDrotar amp in expecta conflict with their adolescents when the adolesshy Kercsmar 2000) Yet the division of iIInessshy a problem cents reported that they were more in charge of related responsibilities between an adolescent resistance decisions than their mothers believed that they and his or her parentscaregivers needs to be increased were (Miller amp Drotar 2003) optimal and reflect the adolescents unique abilishy have beel

In a meta-analysis DiMatteo (2004b) found ties (Lewandowski amp Drotar 2007 Miller amp treatment that the odds of adherence are three times higher Drotar 2003) There is no significant relationshy tes-relatel if patients come from cohesive families than if ship between adolescent chronological age and sion-mak they do not (r=027) Higher levels of mothershy the ability to take responsibility for asthma control (1

reported spousal support were associated with management (Walders et aI 2000) This study One sl less conflict and with greater adherence to treatshy shows that when caretakers reduce their involveshy tence in a ment (Lewandowski amp Drotar 2007) This latter ment in asthma management based on their with tyPl

study was important because it demonstrated childs chronological age they might operate Parent-al

that the spousal support mothers receive may under the false premise that adolescents are conshy lem-solv

play an important role in the health care behavshy sistently able andor willing to take on increasshy adaptivel

iors of their adolescents (Lewandowski amp Drotar ing accountability for asthma management adherenc

2007) DeL ambo levers-Landis Drotar and (Walders et aI 2000) (Miller ~

Quittner (2008) examined associations between It is therefore necessary for families to help municati

observations of the quality of family relationshy and for parents to supervise Yet one study of treatmen

ships and reported adherence to medical treatshy cystic fibrosis patients found that by age IS adoshy decision

ments for older children and adolescents with lescents were completing nearly 90 of their decision

cystic fibrosis Based on childrens reports of daily treatments on their own-although this was ence (m

treatment adherence the positivity of the often done at the cost of poor adherence (Modi making

observed family relationship quality predicted et aI 2008) In addition adolescents who spent relatiom

reported adherence to airway clearance and use more of their treatment time supervised by their nication

of aerosolized medications among child and parents had better adherence (Modi et aI 2008) adolescent patients (DeL ambo et aI 2008) Walders et al (2000) examined family manageshy Parent

Data su

Family and Adolescent Control cents with asthma They found a relationship ment patterns among African-American adolesshy

may no

Responsibility for Illness Management between caretakers overestimation of adolescent cent Cal

Adherence to medication and other treatment responsibility for important self-care tasks and parents

regimens for children and adolescents depends increased nonadherence and functional morbidshy medica

to a great extent on the help of parentsguardshy ity (Walders et aI 2000) These studies demonshy discont

ians and other family members (DeLambo et aI strated that parents and adolescents need seeme

2008) With the onset of adolescence there are anticipatory guidance on how and when to transition

and TA Miller ---_shyf treatment_

cent patients adolescents

ity for their

as children ~d help from

support and s Data sugshy

fferences in

r adherence adolescent

II likely have

compared to

lfciel Slater s Drotar amp n of illnessshyn adolescent needs to be

unique abilishy17 Miller amp ant relationshy

~ical age and for asthma

) This study their involveshysed on their

light operate ents are conshye on increasshy

management

nilies to help one study of age 15 adoshy10 of their

ough this was erence (Modi 1ts who spent vised by their i et aI 2(08) mily manageshyrican adolesshy1 relationship of adolescent

are tasks and ional morbidshyudies demonshyescents need en to transition


responsibility for daily treatment regimens and that family interventions are essential for improvshy

ing adherence among adolescents with chronic illness (Modi et aI 2008)

Should adolescents make their own decisions

about their treatments and take complete responshysibility for them Probably not Lewandowski

and Drotar (2007) found that adolescent decisionshymaking autonomy did not help adherence it was not necessarily a good thing to have adolescents making their own decisions about care Instead decision-making responsibility and disease manshyagement were better negotiated and agreed upon

by parents and their adolescents A discrepancy in expectations about who will make decisions is a problem parentadolescent conflict can lead to resistance to adherence In diabetes treatment increased levels of mother-adolescent conflict have been found to be associated with poorer treatment adherence and mother-reported diabeshy

tes-related conflict and disagreements about decishysion-making autonomy predicted poor glycemic control (Lewandowski amp Drotar 2007)

One study examined decision-making compeshytence in a sample of parents and their adolescents with type I diabetes (Miller amp Drotar 2007)

Parent-adolescent communication during a probshylem-solving task was assessed along with the adaptiveness of adolescent decision-making adherence to treatment and metabolic control (Miller amp Drotar 2(07) Parent-adolescent comshymunication was associated with adherence to

treatment but not with the quality of adolescent decision-making (Miller amp Drotar 2007) Poorer decision-making was associated with lower adhershyence (measured by parent report) and decisionshymaking competence did not mediate the relationships between parent-adolescent commushynication and adherence (Miller amp Drotar 2(07)

Parent-Adolescent Collaboration Data suggest that full responsibility by parents may not be the best course of action for adolesshycent care for several reasons In some research parents made significant errors in the timing of medication and some even encouraged premature discontinuation of medication because symptoms seemed to improve (Dawson amp Newell 1994)

381

Parents with low health literacy have been fOund to struggle to help their children adhere to comshy

plex treatm~nt regimens (Janisse et aI 2010) FamIly habIts have sometimes been found t 0 Jeopardize adherence to the treatment regimen (Nock amp Kazdin 2005) In order to optimize the

efficacy of asthma management for example researchers suggest that family-based treatment

plans should be col1aboratively developed between physicians and family members (Walders et aI 2000) Effective illness management requires good communication between adoles-

cent parents and health professionals in order to have an appropriate and effective division of illness-related responsibilities

Validated Interventions to Improve Adolescent Adherence

Several interventions to improve adolescent adherence have been shown to be effective each emphasizes at least one component of the IMS model and most are multifactorial-incorporating some combination of all of the factors Interventions that target in an integrated way the many elements that affect patient adherence are most likely to be successful (DiMatteo et aI 2012)

In a pilot study with ten adolescents with type diabetes and HbA Ic levels greater than 7

Salamon et al (2010) assessed a cognitiveshybehavioral intervention geared toward challengshying and restructuring negative social attributions that can contribute to nonadherence One hour intervention sessions to boost understanding and motivation were combined with three weekly phone calls that focused on cognitive restructurshying and on problem-solving training to improve strategizing (Salamon et aI 2010) Problemshysolving that was geared toward dealing with social situations (in which adolescents likely experience the greatest pressure to be nonadhershyent) was the most helpful

Nock and Kazdin (2005) used a brief adjuncshytive intervention (called PEl training) which provided parents of adolescents with knowlshyedge motivation and tools toward the goal of

382

overcoming conduct problems and barriers to treatment participation PEl therapists helped parents develop specific plans to overcome each barrier through the use of a change plan worksheet (Nock amp Kazdin 2005) When parents received the training their adolescents had better attenshydance at treatment sessions and showed greater adherence to treatment recommendations

Dean Walters and Hall (20 I 0) conducted a comprehensive search of the literature and reviewed 17 studies that offered empirical data on interventions to improve long-term medicashytion adherence in children and adolescents with chronic disease They examined educational interventions behavior interventions (that may have also included education) and educational approaches combined with another intervention Of seven (primarily) educational interventions only one (Jay DuRant Shoffitt Linder amp Litt 1984) targeted adolescents only and found that an educational intervention with peer counselors significantly increased adolescent girls adhershyence to their oral contraceptives for 1-2 months although the significant effect did not last over the 4 months of the study Four studies involved both children and adolescents but did not allow separate analyses Three of these four were with asthma One study (Hughes McLeod Garner amp Goldbloom 1991) found that home visits and education about asthma management did not affect adherence as measured by medication diary but did lead to significantly better asthma control Another (Farber amp Oliveria 2004) proshyvided single-session education with video and discussion and found adherence significantly higher in the intervention group but only for preventer mediation (not the rescue bronchodilashytor) The intervention group had lower rates of corticosteroid undertreatment In the treatment of HIV in children and adolescents home visits involving education and strategies to resolve adherence barriers resulted in significantly greater self-reported adherence as well as increased dose frequency (Berrien Salazar Reynolds amp Mckay 2004) In this review there were seven studies using behavioral intervenshytions five of which were with both adolescents and children (not separated) and one studying


only adolescents In the latter behavioral management (including advice with contingency contracting advising about problems goal setshyting development of habits and routines and family involvement) prevented missed doses of tuberculosis medication (as self-reported in faceshyto-face interviews) significantly more often than both control treatment and an intervention to improve self-esteem (Hovell et aI 2003) Of the fi ve studies of children and adolescents all showed significant improvements in adherence to some or all medications when the intervention invol ved behavioral management These behavshyioral interventions included monitoring and goal setting reinforcing medication-taking with rewards contingency contracting problem-solving and linking medication taking with established routines to establish habits Van Es Nagelkerke Colland Scholten and Bouter (200 I) found that adolescents with asthma demonstrated better treatment adherence if they received both educashytion and group therapy exploring treatment and disease-focused issues including their attitudes coping skills and management of peers (Two other interventions cited by Dean et al (20 I 0) showed no benefit of education combined with cognitive behavioral therapy or stress manageshyment) No studies were found to demonstrate the effectiveness of intervention to reverse nonadshyherence among young people once nonadhershyence has been established

Future Research on Interventions

Currently validated interventions exist to proshymote adherence among adolescents with chronic disease The empirical data available so far is limited but does suggest that multifaceted intershyventions work better than do single-issue intershyventions The best combination of elements to

produce the greatest improvements in adherence with the greatest efficiency is not yet evident but it does appear that a combination of education information methods for increasing motivation and problem-solving strategies and supports may offer the greatest opportunities for success (Dean et aI 2010) While there is no clear message

Treatment P

from the Ii be effecti empirical tifaceted 5

affect ad] research a seek to de factors of tive elem interventi( Further a studies d( effect size meta-anal field forw from chile todetermi tions for research s lication st extracting allow met adolescen

Clinical

Research ment adh recommel teams (CI

practition case man share inf patients a the medii and their adherenc( ment of 1

and optin et aI 19 not easy there exi5 reports f truthfuln amp Sherb medical 1

together

383 I TA Miller

ehavioral

ntingency

goal setshyines and I doses of d in faceshy)ftenthan

ention to 13) Of the

cents all Idherence tervention se behavshy

~ and goal ing with n-solving stablished 1ge1kerke found that ed better )th educashy

tment and attitudes

ers (Two al (2010) lined with manageshyrtstrate the se nonadshynonadher-

IS

st to proshyth chronic

so far is eted intershysue intershyements to adherence vident but education ilotivation ports may ess (Dean r message


from the literature about why various factors may be effective some of the more theoretical and empirical work in adult adherence notes that mulshytifaceted solutions targeting many factors that affect adherence may be essential Future research attention to intervention studies should seek to determine the mediating and moderating factors of successful interventions so that effecshytive elements can be preserved in exportable interventions that can be used on a wide scale Further as Dean et al (2010) conclude some studies do not provide data for calculation of effect sizes that are necessary for meta-analyses meta-analytic work is essential to moving this field forward Also many studies combine data from children and adolescents making it difficult to determine the unique effectiveness of intervenshytions for adolescent populations Thus future research should focus on adolescents and in pubshylication should offer as much data as possible for extracting or calculating effect sizes in order to allow meta-analyses of the growing literature on adolescent adherence to treatment

Clinical Implications

Research on the challenges of adolescent treatshyment adherence suggests some important clinical recommendations First it is essential for medical teams (consisting of physicians nurses nurse practitioners physician-assistants pharmacists case managers etc) to coordinate their efforts and share information toward the goal of helping patients achieve adherence Second clinicians on the medical team should regularly ask patients and their families about adherence Assessing adherence accurately is central to the enhanceshyment of treatment choices and to the prediction and optimization of health outcomes (Sherbourne et aI 1992) Assessing adherence accurately is not easy of course (Hays amp DiMatteo 1987) but there exist many methods to collect accurate selfshyreports from patients in ways that encourage truthfulness (see measures in DiMatteo Hays amp Sherbourne 1992) Third clinicians on the medical team should help family members work together in treatment management helping each

member of the family to be clear about their responsibilities in the treatment regimen Discrepancies between parents and adolescents perceptions of disease-related decision-making autonomy can contribute to nonadherence identishyfying and solving these discrepancies can be a potentially important area for clinical intervention (Miller amp Drotar 2003) Fourth as Dean et a (20 10) note there is no research to date offering effective interventions to reverse adolescent nonshyadherence once it becomes habitual until evishydence-based offerings are available preventing nonadherence should be a clinical priority Finally the medical team should approach adherence in an organized fashion with a focus on three broad elements of care providing inormation building motivation and assisting with strategy Working on these goals in the context of effective commushynication can result in substantial and significant improvements in adherence and ultimately 10

better adolescent health care outcomes

References

Bearman K J amp La Greca A M (2002) Assessing friend support of adolescents diabetes care The diashybetes social questionnaire-Friends version journal (~f Pediatric Psychology 27(5) 417-428

Berrien V M Salazar J C Reynolds E amp Mckay K (2004) Adherence to antiretroviral therapy in HIVshyinfected pediatric patients improves with home-based intensive nursing intervention AIDS Patielll Care and STDs 18(6)355-363

Blotcky A D Cohen D G Conaster C amp Klopovich P (1985) Psychosocial characteristics of adolescents who refuse cancer treatment journal (d Consulting and Clinical Psychology 53 729-731

Brownbridge B amp Fielding D (1989) An investigation of psychological factors influencing adherence to medial regime in children and adolescents undergoing haemodialysis and CAPD International journal (~f Adolescent Medicine alld Health 4 7-18

Chappuy H Treluyer J M Faesch S Giraud c amp Cheron G (2009) Length of the treatment and numshyber of doses per day as major determinants of child adherence to acute treatment Acta Paediarrica 99(3) 433-437

Chmelik E amp Doughty A (1994) Objective measureshyments of compliance in asthma treatment Allnals (~f Allergy 73527-532

Christian B J amp D Auria J P (1997) The childs eye Memories of growing up with cystic fibrosis journal ofPediatric Nursing 12( I) 3-12

384

Coutts 1 A Gibson N A amp Paton J Y (1992) Measuring compliance with inhaled medication in asthma Archives (~f Disease in Childhood 67(3) 332-333

Cox D J amp Gonder-Frederick L (1992) Major develshyopments in behavioral diabetes research journal (~f

COllsultillg and Clinical Psychology 60 628-638 Dawson A amp Newell R (1994) The extent of parental

compliance with timing of administration of their chilshydrens antibiotics journal (~f Advanced Nursillg 20 483-490

Dean A 1 Walters J amp Hall A (2010) A systematic review of interventions to enhance medication adhershyence in children and adolescents with chronic illness Archives of Disease in Childhood 95 717-723

DeLambo K E levers-Landis C E Drotar D amp Quittner A L (2008) Evidence-based assessment of Adherence to Medical Treatments in Pediatric Psychology journal (~f Pediatric Psychology 33(9) 916-936

DiGirolmo A M Quittner A L Ackerman V amp Stevens J (1997) Identification and assessment of ongoing stressors in adolescents with a chronic illness An application of the behavior analytic model journal of Clinical Child Psychology 26 53-66

DiMatteo M R (2004a) Variations in patients adhershyence to medical recommendations A quantitative review of 50 years of research Medical Care 42(3) 200-209

DiMatteo M R (2004b) Social support and patient adherence to medical treatment a meta-analysis Health Psychology 23(2)207-218

DiMatteo M R Giordani P J Lepper H S amp Croghan T W (2002) Patient adherence and medical treatment outcomes A meta-analysis Medical Care 40(9) 794-811

DiMatteo M R Haskard-Zolnierek K B amp Martin L R (2012) Improving patient adherence A three-factor model to guide practice Health Psychology Review 6(1)74-91

DiMatteo M R Hays R D amp Sherbourne C D (1992) Adherence to cancer regimens Implications for treating the older patient Oncology 650-57

DiMatteo M R Lepper H S amp Croghan T W (2000) Depression is a risk factor for noncompliance with medical treatment Meta-analysis of the effects of anxiety and depression on patient adherence Archives ofmernal Medicine 160(14)2101-2107

DiMatteo M R Sherbourne C D Hays R D Ordway L Kravitz R L McGlynn E S et al (1993) Physicians characteristics influence patients adhershyence to medical treatment Results from the Medical Outcomes Study Health Psychology 12(2)93-102

Drotar D (2009) Physician behavior in the care of pedishyatric chronic illness Association with health outcomes and treatment adherence Journal of Developmental and Behavioral Pediatrics 30(3) 254

Farber H J amp Oliveria L (2004) Trial of an asthma education program in an inner-city pediatric emergency


department Pediatric Asthma Allergy amp Immunology 17(2) 107-115

Friedman I M Litt I E King D R Henson R Holtzman D Halverson D et al (1986) Compliance with anticonvulsant therapy by epileptic youth Journal (~fAdolescent Health Care 7 12-17

Golin C E DiMatteo M R amp Gelberg L (1996) The role of patient participation in the doctor visit Implications for adherence to diabetes care Diabetes Care 19(10) 1153-1164

Hampson S E Glasgow R E amp Toobert D J (1990) Personal models of diabetes and their relations to selfshycare activities Health Psychology 9 516-528

Haskard-Zolnierek K B amp DiMatteo M R (2009) Physician communication and patient adherence to treatshyment A meta-analysis Medical Care 47(8) 826-834

Hays R D amp DiMatteo M R (1987) Key issues and suggestions for patient compliance assessment Sources of information focus of measures and nature of response options The Journal (if Compliance in Health Care 237-53

Hovell M E Sipan C L Blumberg E J Hofstetter C R Slymen D Friedman L et al (2003) Increasing Latino adolescents adherence to treatment for latent tuberculosis infection A controlled trial American journal (~fPublic Health 93( II) 1871-1877

Hughes D M McLeod M Gamer B amp Goldbloom R B (1991) Controlled trial of a home and ambulashytory program for asthmatic children Pediatrics 87(1) 54-61

levers C E Brown R T Drotar D Caplan D Pishevar B S amp Lambert R G (1999) Knowledge of physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers Journal (~f Developmemal and Behavioral Pediatrics 20(5) 335-343

Ingerski L M Baldassano R N Denson L A amp Hommel K A (20 I0) Barriers to oral medication adherence for adolescents with inflammatory bowel disease journal (~f Pediatric Psychology 35(6) 683-691

Jahng K H Martin L R Golin C E amp DiMatteo M R (2005) Preferences for medical collaboration Patient-physician congruence and patient outcomes Patient Education and Counseling 57 308-314

Janisse H C Naar-King S amp Ellis D (2010) Brief report Parents health literacy among high-risk adoshylescents with insulin depe~dent diabetes Journal (~f Pediatric Psychology 35(4)436-440

Jay M S DuRant R H Shoffitt T Linder C W amp Litt I E (1984) Effect of peer counselors in adolesshycent compliance in use of oral contraceptives Pediatrics 73(2) 126-131

Kovacs M Goldston D Obrosky D S amp Iyengar S (1992) Prevalence and predictors of pervasive nonshycompliance with medical treatment among youths with insulin-dependent diabetes mellitus Journal (~f the American Academy (~f Child and Adolescent Psychiatry 311112-1119

Treatment A

Kravitz R L MRR( of recom patients Internal

La Greca A Peer rela health ri lifestyles Pediatri(

La Greca ft health be for treatr

Lewandows between to medii type I d 427-43t

LewisCC patient Random Pediatri

Manning ~ chologilt use of n

Martin LI R (201 adhere healthc

Miller V ft mother decisiOl diabete Journal

Miller V J petence with di 178-18

Modi A ( Quittne vision I fibrosi~

lescenc Murphy [

Parson and an lescent

New Engl Thinkil toimpi diseas tions systen ~ation

Nock M trolled ticipat Consu

Orban L Rexhc

385 IAMilier

Imungy

enson Rbull ompliance tic youth 7 1996) The Ictor visit ~ Diabetes

J (1990) ons to selfshy528 R (2009) nee to treatshy826-834 issues and

lssessment and nature

1pliance ill

)fstetter C Increasing It for latent middot Americall 77 Joldbloom nd ambulashytries 87( I)

aplan Dbull Knowledge o treatment ~ir mothers Pediatrics

I L A amp medication

ltory bowel )gy 35(6)

iMatteo M IUaboration t outcomes ~-314

WIO) Brief ~h-risk adoshymiddot Journal of

r C W amp s in adolesshyltraceptives

middot Iyengar S vasive nonshylong youths middot Journal of

Adolescent


Kravitz R L Hays R D Sherbourne C D DiMatteo M R Rogers W Hbull Ordway L et al (1993) Recall of recommendations and adherence to advice among patients with chronic medical conditions Archives (l lllfemal Medicine f 53( 16) 1869-1878

La Greca A M Bearman K J amp Moore H (2002) Peer relations of youth with pediatric conditions and health risks Promoting social support and healthy lifestyles middotJournal (~f Deveopmellfal and Behavioral Pediatrics 23(4) 271-280

La Greca A M amp Hanna N (1983) Diabetes-related health beliefs inchildren and their mothers Implications for treatment Diabetes 32(Suppl I) 66

Lewandowski A amp Drotar D (2007) The relationship between parent-reported social support and adherence to medical treatment in families of adolescents with type I diabetes journal (~f Pediatric Psychology 32 427-436

Lewis C c Pantel I R H amp Sharp L (1991 )Increasing patient knowledge satisfaction and involvement Randomized trial of communication intervention Pediatrics 88(2)351-358

Manning W amp Wells K B (1992) The effect of psyshychological distress and psychological well-being on use of medical services Medical Care 30541-553

Martin L R Haskard-Zolnierek K B amp DiMatteo M R (20 I0) Health behavior change and treatment adherence Evidence-based guidelines for improving healthcare New York Oxford University Press

Miller V A amp Drotar D (2003) Discrepancies between mother and adolescent perceptions of diabetes-related decision-making autonomy and their relationship to diabetes-related conflict and adherence to treatment journal (~f Pediatric Psychology 28(4)265-274

Miller Y A amp Drotar D (2007) Decision-making comshypetence and adherence to treatment in adolescents with diabetes journal (J Pediatric Psychology 32(2) 178-188

Modi A c Marciel K K Slater S K Drotar D amp Quittner A L (2008) The influence of parental supershyvision on medical adherence in adolescents with cystic fibrosis Developmental shifts from early to late adoshylescence Childrens Health Care 37 78-92

Murphy D A Lam P Naar-King S Harris D R Parsons J T amp Muenz L R (2010) Health literacy and antiretroviral adherence among HIV-infected adoshylescents Patiellf Education and Coumeling 79 25-29

New England Healthcare Institute (2010 December 22) Thinking outside the pillbox A system wide approach to improving patient medication adherence for chronic disease Retrieved from httpwwwnehinetJpublicashyti 0 nsl44th i n ki n g_o u t si de_ the_pi II box_a_ systemwide_approach_to_improving_patiencmedishycation_adherence_for_chronic_disease

Node M K amp Kazdin A E (2005) Randomized conshytrolled trial of a brief intervention for increasing parshyticipation in parent management training Journal (~f COllsulting alld Clinical Psychology 73(5)872-879

Orban L A Stein R Koenig L J Conner L c Rexhouse E L Lewis J Y et al (2010) Coping

strategies of adolescents living with HIV Diseaseshyspecific stressors and responses AIDS Care 22(4) 420-430

Phelan P D (1984) Compliance with medication in children journal (l Paediatrics and Child Health 20(5) 1440--1754

Prochaska J 0 DiClemente C c amp Norcross J C (1992) I n search of how people change Applications to addictive behaviors American Psychologist 47 1102-1114

Rapoff M A (1999) Adherence to pediatric medical regimens Dordrecht Netherlands Kluwer Academic Publishers

Rieken K A amp Drotar D (1999) Who participates in research on adherence to treatment in insulinshydependent diabetes mellitus Implications and tecshyommendations for research journal (~f Pediatric Psychology 24(3) 253-258

Rohan J Drotar D McNally K Schluchter M Rieken K Vavrek P et al (20 I0) Adherence to pediatric asthma treatment in economically disadvanshytaged African-American children and adolescents An application of growth curve analysis Journal (~f

Pediatric Psychology 35(4) 394-404 Rudy B J Murphy D A Harris D R Muenz L amp

Ellen J (2009) Patient-related risks for nonadherence to antiretroviral therapy among HIV infected youth in the United States A study of prevalence and interacshytions AIDS Patient Care alld STDs 23(3) 185-194

Salamon K S Hains A A Fleischman K M Davies W H amp Kichler 1 (2010) Improving adherence in social situations for adolescents with type I diabetes mellitus (T I DM) A pilot study Primary Care Diabetes 4( 1)47-55

Schrag S J Pena c Fermindez J Sanchez J Gomez Y Perez E et al (200 I) Effect of short-course high-dose amoxicillin therapy on resistant pneumoshycoccal carriage a randomized trial JAMA The Journal (I the American Medical Association 286( I) 49-56

Sherbourne C D Hays R D Ordway L DiMatteo M R amp Kravitz R L (1992) Antecedents of adherence to medical recommendations Results from the medishycal outcomes study journal (~f Behalioral Medicine 5(5)447-468

Sherbourne C D Wells K B Meredith L S Jackson C A amp Camp P (1996) Comorbid anxiety disorder and the functioning and well-being of chronically ill patients of general medical providers Archives (~f

General Psychiatry 53 889-895 Simmons L E Logan D E Chastain L amp Cerullo M

(2010) Engagement in multidisciplinary interventions for pediatric chronic pain Parental expectations barrishyers and child outcomes The Clinical journal (4Pain 26(4)291-299

Simon G Ormel J VonKorff M amp Barlow W (1995) Health care costs associated with depressive and anxishyety disorders in primary care The American Journal (~fPsychiatry J52 352-357

Thomas A M Peterson L amp Goldstein D (1997) Problem solving and diabetes regimen adherence by

386 MR DiMatteo and TA Miller

children and adolescents with IDDM in social pressure situations A reflection of normal development Journal (4 Pediatric Psychology 22(4) 541-561

Van Es S Mbull Nagelkerke A E Coli and V T Scholten R J P M amp Bouter L M (2001) An intervention programme using the ASE-model aimed at enhancing adherence in adolescents with asthma Patient Educatiol and Counseling 44(3) 193-203

Walders N w Drotar D amp Kercsmar C (2000) An interdisciplinary intervention for undertreated pediatshyric asthma Chest 129 292-299

Weissberg-Benchell J Glasgow A M Tynan W D Wirtz P Turek J amp Ward J (1995) Adolescent diabetes management and mismanagement Diabetes Care 18 77-82

World Health Organization (2003) Adherence to longshyterm therapies evidence for action Geneva Switzerland Eduardo Sabate

Wysocki Too Greco P amp Buckloh L M (2003) Childhood diabetes in psychological context In M C Roberts (Ed) Handbook (~f pediatric psychology (3rd ed) New York Guilford Publications Inc

WilliamTODonohue bull Lorraine T Benuto Lauren Woodward Tolle Editors

Handbook of Adolescent Health Psychology

~ Springer ~ 13

374

responsibility for various health actions including testing blood sugar levels taking insulin injecshytions following a prescribed diet or avoiding proscribed foods (eg those containing gluten) doing specific exercises for a sports injury and following a daily asthma treatment regimen to avoid a breathing crisis

The prevalence of nonadherence across a wide variety of diseases regimens and patient populashytions averages 25 although in some disease conditions such as the complex management of diabetes nonadherence can be 50 or more In meta-analytic work with stable estimates there is a significant trend for (40 I) studies of adults to yield higher adherence (768 ) than (I 16) studshyies of pediatric patients (706 ) (t(515) =284 p=0005) Among adult patients there is no relationship between age and adherence (83 studshyies r~ 00 I d= 002) but among pediatric patients (41 studies r=-006 d=-012) adhershyence is lower among adolescents than it is among children (plt010) (DiMatteo 2004a)

Treatment nonadherence in pediatric populashytions is estimated in further studies to be about 50-55 (Rapoff 1999) among children with asthma followed in a specialist clinic medication adherence was about 70 (Phelan 1984) Based on structured interviews and daily phone diaries more than 50 ofadolescents with cystic fibrosis reported doing less than their prescribed airway clearance regimen and 30 indicated that they were not doing any of their prescribed regimens (DiGirolmo Quittner Ackerman amp Stevens 1997) In a study of prescription medication adherence among adolescents complete adhershyence to the prescription was only 362 (Chappuy Treluyer Faesch Giraud amp Cheron 2009) Between 50 and 60 of children and adoshylescents with adherence problems were found to underuse their prescribed medication (while less than 10 overused it) (Chmelik amp Doughty 1994 Coutts Gibson amp Paton 1992) Among adolescent patients with adequate functional health literacy 357 were categorized as adhershyent but only 235 of those with marginalinadshyequate health 1iteracy were categorized as adherent (Murphy et aI 2010) Twenty-five pershycent of adolescents with type I diabetes reported


mismanagement behaviors such as missing insushylin shots (Kovacs Goldston Obrosky amp Iyengar 1992 Weissberg-Benchell et aI 1995) In asthma treatment the average overall adherence rate among African-American adolescents (measured as daily mean percent of prescribed inhaler puffs) was only 315 Adherence also decreased over time from 42 at the start of the study to only 202 of prescribed puffs after a year on treatshyment (Rohan et aI 2010)

Simmons Logan Chastain and Cerullo (2010) found variability in adherence as a funcshytion of the treatment regimen Among adolesshycents who were recommended a medication change 531 were fully adherent 875 were fully adherent to obtaining additional recomshymended tests Of participants prescribed physical therapy 100 were fully adherent to continuing if they had already started but only 75 began 909 were fully adherent to use of a TENS unit but only 60 were fully adherent to an indepenshydent exercise program Adherence to psychologishycal recommendations varied as well 857 of adolescents were fully adherent to continuing treatment with their current therapist but only 467 were fully adherent to beginning cognishytive behavioral therapy (Simmons et aI 20 I0)

Understanding Treatment Adherence in Adolescent Patients

The empirical literature on treatment adherence in all age groups has documented a wide variety of factors that influence the degree to which patients follow medical recommendations Researchers have offered empirical evidence for

the contribution of dozens of intra- and interpershysonal environmental disease-related and regishymen-related factors Practical applications of this research are somewhat limited however because there are so many causes of nonadherence It is critical to understand these causes in a workshyable conceptual framework in order to design successful programs to advance adherence among adolescents DiMatteo et al (2012) describe the Information Motivation Strategy (IMS) model which distills the findings of the

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management
















381











382








Treatment P



Clinical




together

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13

d TA Miller
















------~-----------~--------


















Data su


may no









ity for their



fferences in


II likely have

compared to






management
















381











382








Treatment P



Clinical




together

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13


------~-----------~--------


















Data su


may no









ity for their



fferences in


II likely have

compared to






management
















381











382








Treatment P



Clinical




together

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13



ity for their



fferences in


II likely have

compared to






management
















381











382








Treatment P



Clinical




together

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13

382








Treatment P



Clinical




together

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13

383 I TA Miller

ehavioral

ntingency





tment and attitudes


IS









References








384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13

384
































Treatment A











lescenc Murphy [




Orban L Rexhc

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13

385 IAMilier

Imungy




1pliance ill









Adolescent









































~ Springer ~ 13










~ Springer ~ 13

m. robin dimatteo and tricia a. miller

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